Which data in the French registry for advanced chronic kidney disease for public health and patient care?

Chronic kidney disease is a chronic non-transmittable disease of increasing incidence. The advanced stages are complicated by high morbidity and mortality, and individual management is complex due to the various treatments required at stage 5 including renal replacement. For the healthcare system, this disease also requires complex care organization. National registers of patients on renal replacement therapy have been developed to improve patient management and care arrangements. The purpose of our review was to report on the history of the French registry, its organization, the information collected and its evolution in response to the stage 5 problem. We successively detail the information system with its inclusion criteria, architecture and tools developed, its security rules, mode and type of information collected, its quality controls and, finally, the glossary of data available within the registry.

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